Dementia

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Receiving a diagnosis of dementia: The experience over time Myrra Vernooij-Dassen, Els Derksen, Philip Scheltens and Esme Moniz-Cook Dementia 2006 5: 397 DOI: 10.1177/1471301206067114 The online version of this article can be found at: http://dem.sagepub.com/content/5/3/397

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a rt i c l e

de men tia

Receiving a diagnosis of dementia

dementia

© 2006 sage publications www.sagepublications.com vol 5(3) 397–410

The experience over time MYRRA VERNOOIJ-DASSEN ELS DERKSEN

Alzheimer Centre, Nijmegen,The Netherlands

Radboud University,The Netherlands

P H I L I P S C H E LT E N S ESME MONIZ-COOK

VU University,The Netherlands University of Hull, UK

Abstract There are strong opinions about the advantages and disadvantages of a disclosure of dementia to the individual affected, but little is known about how they and their families understand and respond to this information. This article reports and examines the impact of receiving a diagnosis of dementia, by comparing descriptions of its impact at two weeks, with descriptions explored at 12 weeks. Interviews were undertaken on two occasions with 18 couples, one of whom had received a diagnosis of dementia, the other being a family member. The interviews revealed a gradual process of realization of what the diagnosis meant, resulting in important subtle changes in understandings of dementia and personal relationships. Disclosure of dementia occurs at one point in time, but its impact should be seen as a process. Suggestions are made on how the process of diagnosis and its sharing may enhance family partnerships and social relationships through support of both individuals with dementia and families. Keywords

carer; disclosure; disease management; impact; personal

report

The current debate on sharing information on the diagnosis of dementia with people with dementia has focused on the advantages and disadvantages. A recent review described the perceived positive consequences as: confirmation of suspicions, an end to uncertainty, increased understanding of problems, access to support and an opportunity to develop positive coping strategies or plan short-term goals, whilst non-disclosure or vagueness was reported as confusing or upsetting (Bamford et al., 2004). DOI: 10.1177/1471301206067114


dementia 5(3) Perceived negative consequences were: anxiety about increasing disability, negative effects on self-esteem, restricted activities, preoccupation with the diagnosis, hyper-vigilance and the potential for precipitating a crisis (Bamford et al., 2004), or physicians’ fears of causing harm to their patients (Pinner & Bouman, 2002). Some medical practitioners find it hard to share a dementia diagnosis (Iliffe, Manthorpe, & Eden, 2003) whilst others report that explaining a dementia diagnosis is more difficult than for other diseases (Glossser, Wexler, & Balmelli, 1985). This may be why there is variable practice, with family doctors formally providing dementia diagnoses to only 47 percent of patients (van Hout,Vernooij-Dassen, Hoefnagels, & Grol, 2001) and only half of geriatricians in one study openly discussing the diagnosis with their patient (Carpenter & Dave, 2004; Pinner & Bouman, 2002). Of the 59 studies reviewed (Bamford et al., 2004), under a quarter examined the views of people with dementia. Most people with suspected dementia think it is important that they are told their diagnosis (Dautzenberg, van Marum, van der Hammen, & Paling, 2003; Erde, Nadal, & Scholl, 1988). Most want a diagnosis, with expressions of distress at inadequate information (Clare, 2003; McWilliams, 1998; van Hout, Vernooij-Dassen, Bakker, Blom, & Grol, 2000), but some can be explicit in not wanting to know what might be wrong (Marzanski, 2000). In one study only 47 percent of people with dementia knew their diagnosis and 66 percent did not think that their illness had ever been discussed with them (Marzanski, 2000). Despite these preferences of people with dementia and the policies of some governments about their rights to know their diagnosis (for instance, in England and Wales see Department of Health, 2001, 2002), in practice sharing the diagnosis may be difficult. Major obstacles prevent sharing the news, including the fear of doing harm to individuals by telling them their diagnosis (Pinner & Bouman, 2002), uncertainty about the diagnosis and the feeling of having nothing to offer (Cantegreil-Kallen et al., 2005; van Hout et al., 2000; Vernooij-Dassen, Moniz-Cook et al., 2005). These uncertainties result in uncertain doctors (Dinant, 2004). Disclosure itself is a major intervention (Moniz-Cook & Woods, 1997). Information needs to be individualized, taking into account the person’s particular perception of their difficulties and the concerns of families (Woods et al., 2003). It can also be an opportunity for timely psychological treatment (Husband, 2000). Intervention in dementia care needs to include both halves of the ‘care-giving dyad’ (the person with dementia and the carer when there is one), since the well-being of one influences that of the other (Charlesworth, 2001). To date the literature has concentrated on quantification of attitudes and practice, with most investigations exploring families’ or professionals’ attitudes and less emphasis on understanding the 398


vernooij-dassen et al.: receiving a diagnosis of dementia perspectives of the person with dementia, or the meaning of the diagnosis for them and their families (Bamford et al., 2004). Recent research has therefore turned to exploring the dynamic relationship between the person with dementia and their spouse or carer (Hellstrom, Nolan, & Lundh, 2005; Keady & Nolan, 2003). Retrospective findings about the post-diagnostic experiences of people with dementia and their carers revealed that a major theme for both was that of making sense and adjusting to loss (Robinson, Clare, & Evans, 2005; Young, 2002). The purpose of this article is to prospectively describe and understand the impact of receiving a diagnosis for individuals and their family carers over time, in order to suggest best practice for services and practitioners. We provide recommendations on what is needed for the disclosure of the diagnosis of dementia to become a timely psychosocial intervention for both the individual and the supporting family member.

Methods We undertook a qualitative analysis of a series of cases because this method provided the opportunity for an in-depth exploration of experiences, beliefs, and fears regarding the diagnosis of dementia, of both people with dementia and the family member, within the context of their relationship. Participants Participants in this case series study were 18 pairs of individuals who had received a diagnosis of dementia at a memory clinic in the Netherlands and one of their family members (hereafter referred to as a carer). The reported duration of memory problems ranged from less than one to five years. Eleven participants (61%) reported the onset of these difficulties over a period of one to two years. Most carers were spouses (see Table 1). Participants were included if they had received a diagnosis of dementia and were fluent Dutch speakers. They were excluded if they had a serious or important illness other than the diagnosis of dementia. Data collection Informed consent was asked from both the individual and their carer. The interviews were held at two time points, two weeks after the diagnostic disclosure and 10 weeks later, to study the impact over time. The interviews at two weeks have been described in detail elsewhere (Derksen, VernooijDassen, Gillissen, Olde-Rikkert, & Scheltens, in press). The period of two weeks after disclosure was chosen because we wished to capture early reactions allowing a short time for the person with dementia and the carer 399


dementia 5(3) Table 1 Characteristics of people with dementia (N = 18) Age Cognition: MMSE-score (0–30) Gender: Male Female Living situation: Co-resident with partner Alone Availability of adult children Duration of memory problems: Less than 1 year 1–2 years 2–5 years missing data

Mean 71 years; SD = 7.9 Mean 22; range 15–30; SD = 4.9 14 (78%) 4 (22%) 15 (83%) 3 (17%) 11 (65%) 2 (11%) 11 (61%) 2 (11%) 3 (17%)

to realize the impact of the diagnosis. The 10-week interval was chosen to in order to gain an impression of the process over a period that was short enough to be related to disclosure but long enough for them to become acquainted with the diagnosis. The interviews with individuals and carers took place separately, to ensure as free an expression of thoughts and feelings as possible. A qualified nurse, who was experienced in coordinating care, carried out the interviews. Interview guide A semi-structured interview guide was used, including topics derived from the literature (Bender & Cheston, 1997; Rymer et al., 2002) and practice experience. The interview guide was drawn up in close collaboration with the persons’ care coordinator. The main topics were categorized as ‘internal topics’, which refer to the person and ‘external topics’, which refer to the person’s relationships (Britten, 1995). A panel of four experts (three in psychosocial interventions and dementia care and one in qualitative research) evaluated the validity of the two versions of the topic lists, including sub-topics and questions. A topic was included when at least three experts agreed on it. Some sub-topics and questions were excluded and others reformulated following the experts’ suggestions. The following topics were used in the final interview: emotions; physical signs and symptoms; future perspective; self-esteem; having a purpose in life; relationship with partner, family and friends; and practical consequences. Carers were asked about the same topics, but in relation to their own personal reactions and coping with the disclosure of the diagnosis of dementia. The interviews lasted from 15 to 30 minutes; they were 400


vernooij-dassen et al.: receiving a diagnosis of dementia videotaped in order to record non-verbal reactions, thus facilitating interpretation of the material.

Data analysis The interviews were analysed using the qualitative method of the grounded theory, a constant comparative analysis to identify common themes and issues (Corbin & Strauss, 1990; Wester, 1995). The process of identifying domains included the coding of verbal and non-verbal signs and their interpretations and an ongoing re-evaluation of the material as more data were analysed. Three domains were identified in a previous case study on disclosure (Derksen, Vernooij-Dassen, Gillessen, Olde-Rikkert, & Scheltens, 2005). These domains were used in this case series study as an analytic framework in the process of (re-)reading the interviews and in selecting and coding the data. After two researchers had independently analysed the material, the results were compared and discussed until agreement on the key themes was achieved. The same 18 pairs were again interviewed 12 weeks following diagnosis using the same methodology. Changes between two- and 12-week post-disclosure were identified either by comparison of the two interviews or where there were explicitly mentioned by participants. Saturation of information about changes was reached after nine cases.

Findings This article describes the process and impact of receiving a diagnosis, by examining the changes in reported experiences and views between two weeks and 12 weeks. To do this, the findings of the post disclosure at two weeks (Derksen et al., in press) are summarized first. Two weeks after receiving their diagnosis those interviewed talked about three key domains: their awareness of dementia, partnership, and social relationships. Two weeks following diagnosis there was no evidence that being given their diagnosis inevitably caused negative feelings (Husband, 2000) or harm (Pinner & Bouman, 2002). Individuals and carers who did not expect a dementia diagnosis said they felt threatened and shocked by the news. Most individuals and their carers perceived the diagnosis as a confirmation of their suspicions, although formal disclosure seemed an important trigger for making decisions about their future and enhancing a preparedness to express feelings of loss and grief. Learning the diagnosis allowed some carers to review their responses to changes in the person with dementia and their role in the relationship. Two weeks following receipt of the diagnosis families said they were already adjusting to becoming ‘carers’, some 401


dementia 5(3) acquiring an appreciation of the relatives’ remaining capacities, whilst the individuals with dementia described their attempts to ‘hold on’ to their roles in social relationships. They wanted to remain valuable to others. Changes in awareness, partnership and social relationships: From two to 12 weeks The three themes derived at two weeks were also found at 12 weeks, but there were some subtle sub-theme changes in each. Changes in awareness Accepting the diagnosis and symptoms continued to be problematic for some individuals:

I am little bit sad. (Person with dementia (PwD) 1) I am angry when I forget things. (PwD 4) My memory loss is frightening. (PwD 3, interviews 1 and 2)

Others had developed ways of coping with knowledge of their dementia through minimization, or distraction: At my age, I don’t have a reason to complain. (PwD 5) I try to distract myself by leisure activities. (PwD 8)

There were also changes in perception, emotion and experience of the same problem. For example: In the first interview: ‘I use the wrong words, people don’t understand the words I use’ (PwD 5), whilst in the second interview with PwD 5 the video recordings indicated strong emotional reactions where the participant became frustrated and angry when he could not find the words to express himself. (Researcher)

Some individuals with dementia began drawing on their autonomy to get the best out of life: I am more active, I do the things I can do. (PwD 7)

Others described their struggle and their loss of autonomy: Why am I not allowed to drive any longer? (PwD 2)

Carers also tried to consider their relative’s autonomy: It seems that helping her should go as subtly as possible, else she gets upset. She does not want to be helped. (Carer 4) Changes in partnership Both the person with dementia and carers

described changes. Some people with dementia were sensitive about the burden for their partner caused by their problems: 402


vernooij-dassen et al.: receiving a diagnosis of dementia What a pity for you to get such a difficult husband. (PwD 2)

In her interview, his wife (Carer 2) made a positive comment: I now realize how much I love my husband.

There were also negative changes reported by both people with dementia and carers. People with dementia now feared negative reactions by others, such as: Do you know nothing any more? (PwD 3)

Here the carer too reported a fundamental change: The character has been changed; the nice and cosy atmosphere at home has disappeared. (Carer 3)

For some carers the loss of previous joy and companionship was hard to accept and others began to feel rejected by their partner’s responses to the consequences of dementia: Sometimes I feel so lonely. (Carer 7) She does not allow me to do things for her. (Carer 3) We are no longer equal partners . . . there is less to talk about. (Carer 4)

But it was still possible to take pleasure in their partner’s happiness and appreciate their gifts, continued positive aspects and capabilities: I am glad that he enjoys doing things. (Carer 7) He has changed a little bit, but we still can do a lot of things together. (Carer 2)

Practical decisions were made between two and 12 weeks: I consider to ask for more help at home in the near future. (Carer 5)

Some couples had used the time to make significant decisions about the future and reported life events such as: We married, after living together for many years. (PwD 7) We moved to a nice quiet place. (PwD 8) We decided not to move, because he would get lost in his own house. (Carer 1) Changes in social relationships Telling family and friends about the

diagnosis often brought positive responses and surprises about what others already knew: The children were very supportive. (PwD 2) I told it to his friends, they already were aware of changes. (Carer 3)

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dementia 5(3) Or the carer was encouraged by one friend to tell other friends about the situation: You have to tell it, you don’t have to be ashamed. (Carer 2)

In summary, whilst the broad themes seen at two weeks remained evident 10 weeks later, there were subtle changes in the depth and variety of experiences, emotions expressed and practical action at the 12-week time point. Changes observed are often not clear cut, but remain subtle and are often noticed retrospectively. First, changes can occur within a process of mutual adjustment in the relationship between the person and carer. Thus, some couples realize their mutual interdependence in their expressions of partnership, whilst some carers accept that the partnership balance had significantly altered. Second, some carers can have a sense of hopefulness due to their perceptions of retained positive gifts and capacities within their relative (see Carers 7 and 2 above), but can, at the same time, acknowledge their own sense of loneliness (for example, Carer 2 above). Third, some carers appear to adjust well to an individual’s need for autonomy, as is seen in the descriptions of Carer 4: ‘It seems that helping her should go as subtly as possible’, whilst others can feel rejected when their help is not accepted (for example, ‘She does not allow me to do things for her’ – Carer 3). Fourth, although some individuals remained upset about their poor memory (see PwD 3), others had grasped the nettle (see PwD 7) and some couples had made significant life changes in the 12 weeks following their diagnosis. Finally, individuals and their families discovered that friends and other family members were not surprised at their news.

Discussion This comparison from week two to week 12 following diagnosis describes the way people and their families came to a gradual and subtle realization of what the diagnosis meant as applied to their lives. The results provide insight on how they made quite personal and individual decisions about how to adjust their lifestyles. In the three months after being diagnosed, people with dementia used coping strategies such as minimization or distraction. They also struggled with their losses, especially that of autonomy. Carers gradually acknowledged the changes in their relationship with the person with dementia. The loss of previous joy and companionship was hard to accept. On the other hand, it was still possible to take pleasure in their partner’s hope and appreciate their continued positive assets and capabilities. Some couples had used the time to make significant 404


vernooij-dassen et al.: receiving a diagnosis of dementia decisions about the future and reported significant life events such as getting married or moving to another house. Our findings provide further support for the recent Zeitgeist toward understanding dementia within the context of human relationships (Keady & Nolan, 2003), where research simultaneously explores what is happening with both the individual with dementia and family member. The interviews show a consistent mutual concern by people with dementia and their families for each other reflecting the balances of supportive partnerships. In the interviews, people with dementia acknowledged their memory problems, confirming studies that they are aware of their difficulties, and this does not diminish over time (Clare, Roth, & Pratt, 2005; Robinson et al., 2005; Young, 2002). Their concerns about becoming a burden to their carers also remained over the 12 weeks, contradicting some views (see the discussion on stigma in dementia in Vernooij-Dassen, Moniz-Cook et al., 2005), that people with dementia are unable to understand or have feelings. As with other reports (Robinson et al., 2005), both the person with dementia and carers expressed feelings of loss and grief. They especially struggled with the loss of autonomy: no longer being able to live according to their own norms and standards (Vernooij-Dassen, Osse, Schadé, & Grol, 2005). This is similar to the process experienced by patients who are in a palliative phase of cancer (Vernooij-Dassen, Osse et al., 2005), but our data show that carers can learn to safeguard their relative’s sense of autonomy by providing subtle help. Also consistent with the limited literature (Young, 2002) they remained, after 12 weeks, concerned and mutually protective about their partnership and interdependence, as is indicated within individuals’ worries and the burden on their family. There were no examples of reactions of devastation (Young, 2002, p. 32) either at two weeks or at 12 weeks. This might be due to the careful disclosure process at the memory clinic, allowing individuals and carers to express their emotions evoked by the diagnosis. Moreover, the qualitative interviews may have themselves moderated the experiences and reactions of the individuals and their families, since both indicated that they had enjoyed meeting with the researcher (ED), an experienced care coordinator who conducted the research interview. Between two and 12 weeks after learning of the diagnosis, some carers had begun concrete plans for assistance in the home, suggesting that the diagnosis had mobilized the need for practical help for some, whilst others had made significant lifestyle changes. This confirms the advantages of providing as early diagnosis as possible regarding future planning and short term goals (Iliffe & Manthorpe, 2004; Pratt & Wilkinson, 2003). 405


dementia 5(3) Implications for practice after diagnostic disclosure This study is limited in only reporting a small number of experiences from one setting (i.e. a memory clinic) in one country. Generalizability to other cultures and settings may therefore be limited. Nonetheless, it is possible to use the findings in the context of international opinion, to offer suggestions on best practice. One concept that might usefully direct dementia care in providing reassurance for people and families (West, 2003) at this early phase of disclosure, is that of Personal Disease Management (PDM; Vernooij-Dassen & Olde-Rikkert, 2004). This case management system for coordination within primary care aims to improve the quality of ongoing support in chronic conditions. It is a proactive, systematic approach to care that reviews the personal needs of the individual with dementia and the family carer, assesses what is available to support particular needs and assists professionals to collaborate with the person and carer (see Vernooij-Dassen & Moniz-Cook, 2005). We suggest that the early period following diagnosis is an opportune time to facilitate such relationships that will require ongoing case management and collaboration between disciplines. Applied to this early stage of discovery, the dementia case manager acting within a PDM programme can offer a variety of support that may be applied with differing intensity. This can include offering opportunity to express feelings about the received diagnosis, identifying needs for support for both people with dementia and carers, explaining changes in behaviour to both, help with self-management of symptoms and supporting decisions about preferred professional help. This research goes some way towards understanding the impact of receiving a diagnosis of dementia for both the individual and the carer (often a spouse) over a short period of time, thus addressing the call for practice over sharing a diagnosis of dementia to be set in well-designed qualitative studies of the experiences and perspectives of individuals with dementia and their families (Bamford et al., 2004). The changes are often subtle and reflect the changed relationship, turning partnerships into a patient–carer relationship. Acknowledging the strengths of the person with dementia seems to be beneficial for the relationship between the person and their family. Maximizing the resources of people with dementia and families at the time of diagnosis is a key time for psychosocial support (Woods et al., 2003). This data, taken together with the related studies reviewed, offer suggestions on how the process of diagnosis and its sharing may enhance valued family partnerships and social relationships, through support of both individuals with dementia and families. First, support for receiving the diagnosis of dementia needs to be delivered over a period of time, since the explorations of changes between two and 12 weeks confirmed that 406


vernooij-dassen et al.: receiving a diagnosis of dementia while a diagnosis may be shared at one point in time, its impact is a process in which awareness grows and relationships are reconsidered. Second, providing families with information derived from this study is confirmed as good practice in that children, relatives and friends are rarely surprised and can be supportive. Such information may assist the psycho-educative process of helping people with dementia and carers to direct their attention away from ‘covering up’ towards maintenance of a valued social identity and access to support from friends and family. Some carers appeared more upset than the person with dementia on hearing the diagnosis, due to their perception of loss, replicating a finding from a similar study in France (Cantegreil-Kallen et al., 2005). The person with dementia may also require support from others in maintaining pleasure and social relationships when their distressed carer may not feel able to encourage or allow this. Talking with people and families about their perceptions, changing roles within the partnership and reinforcing positive personal and family attributes or opportunity for maximizing pleasure can be timely support for them. This may go some way to promoting a sense of safety within the uncertainty of living with dementia. Acknowledgements

We wish to thank the study participants, the anonymous reviewers and INTERDEM member, Professor Jill Manthorpe, for assistance with preparation of the manuscript. This study was funded by the Dutch Alzheimer Association. References

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a medical sociologist and teaches on a vocational training scheme for general practitioners at the University of Nimegen in the Netherlands. She is involved in research on dementia, palliative cancer care, transmural care and professional practice. She is a senior lecturer and coordinator of the Alzheimer Centre, Nijmegen and Head of the Transmural Quality of Care research group at the Centre for Quality of Care Research. She acts as Deputy Chair on the board of INTERDEM (timely INTerventions in DEMentia). Address: Alzheimer Centre Nijmegen/Centre for Quality of Care Research, Radboud University Medical Centre Nijmegen, PO Box 9101, 6500HB, Nijmegen, The Netherlands. [email: [email protected]] E L S D E R K S E N , RN, MSc, has practised in nursing care for dementia patients for eight years. She is currently researching for her PhD on ‘Disclosure in Dementia’ at the

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dementia 5(3) Alzheimer Centre Nijmegen, in the Netherlands. She is also involved in the Department of Nursing Home Medicine, which is one of the partners in the Alzheimer Centre. She is member of INTERDEM. Address: Alzheimer Centre Nijmegen/Centre for Quality of Care Research, Radboud University Nijmegen Medical Centre, PO Box 9101, 6500HB, Nijmegen, The Netherlands. [email: [email protected]] P H I L I P S C H E LT E N S , MD, PhD, is a neurologist who has had a particular interest in dementia for more than 15 years. He is Head of the Alzheimer Center at the VU University Medical Center. He directs patient care as well as research and leads a group of five doctoral fellows, 15 PhD students and four staff neurologists. He is a member of the European Alzheimer Disease Consortium (EADC) and leads the European Task Force on Age Related White Matter Change. He is also member of the steering committee of the European Longitudinal Study on the Impact of Age Related White Matter changes on Disability (LADIS). Both these projects are funded by the European Commission. Address: Free University Medical Centre, VUMC PO Box 7057, 1007MB, Amsterdam, The Netherlands. [email: [email protected]] E S M E M O N I Z - C O O K , PhD, has practised clinical psychology for 26 years in the UK and in Ireland. She is Professor in Clinical Psychology at the Post Graduate Medical Institute, University of Hull and Consultant Clinical Psychologist at Humber Mental Health Teaching NHS Trust in East Yorkshire, UK. She is founder and chair of INTERDEM, a pan-European multi-professional research-practice network, established with part funding from the European Commission in 1999. Address: c/o Coltman Street Day Hospital, Coltman Street, Hull HU14 3PG, UK. [email: [email protected]]

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